My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path. I'm learning how to enjoy whatever path I'm on.

Sleep has been elusive lately, especially at night when we're supposed to be sleeping. It's not so bad at first, when I toss and turn and try to get comfortable. It always takes a little while for me to fall asleep, but then about 2 or 3 am, my brain starts to take inventory. At this hour, I firmly believe our own brains are out to get us. They're just sitting in our heads thinking, how many embarrassing memories can we throw out there tonight? How many mistakes can can we bring up. Oh, we love guilt trips!

Why is this happening now? It's just gotten cool enough to really sleep well. Even in the heat, I was sleeping well all summer. Why now?

I can just hear my mentor teacher telling me, "It is Michaelmas, you know." My best friend would say, "It is Rosh Hashana, you know." It's also the Fall Equinox with it's many names and customs throughout the world. It's time to give thanks for the harvest. Time to look back at our own lives and see what our deeds have sown and what they have harvested, good and bad. In a number of these traditions, it's also time to visit your ancestor's graves and tidy them. In other words, it's an honest look at life and death and and our own mortality before the challenges of plunging forward through the shorter, darker, colder days of winter. The earth is going to sleep - bulbs and seeds are dormant, lots of animals hibernate - but we have to get up early and shovel snow off the sidewalk.

For me, this year, it's been time to look at how to step back and let go. What do I need to do? How much do I need to do? This year, more than any other year, I find comfort in the well known prayer: Grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

My brain starts smirking here because there are so many ways to make me feel guilty. Our family has had to deal with numerous health challenges. Am I doing enough for my parents? My grandkids? My kids? Am I cooking the right kinds of foods? Keeping the house neat enough? Being a good role model? Should I go back to making my own mayonnaise?

I've had to take a step back and let go of any crazy idea that I am perfect and will always make the right decision. This doesn't mean I'm not taking my caregiving duties seriously, it means I cannot control everything. I can't insist that my dad give up his dentures for an entire week so they can be adjusted and he won't look like Bugs Bunny. I can't insist they go to their doctors' appointments. Trouble is, I'm their medical power of attorney and, well, that means I am their primary caregiver and responsible for them. Being responsible for people is, at best of times, a messy business. For my dad right now, I have to weigh the benefits of letting him live as independently as possible in assisted living or having him in a facility with 24 hour nursing care, but where he would have to live in a tiny room without mom.

As I lay awake early this morning, another memory sneaked through the layers of gray matter. I don't think my brain really wanted to let this one out. It was a memory of a conversation with a neighbor years ago. She was 85 years old and up on a ladder, cleaning out her gutters. We chatted for awhile. She said her kids didn't want her to do this; they said it was too dangerous for her to be climbing on the ladder so high. She might fall. I was ready to agree wholeheartedly with her children, but then she put her head back and started to laugh, "I told them, 'What's it going to do? Shorten my life? I'm 85 years old!'"

Dad is 93. Mom is 88. They might not always make the best decisions for themselves. I'm 60 and I'm not a nurse. I might not always make the best decision as to when they should make their own decisions. We're mucking through this old age business the best we can. I'm glad they can live in the assisted living apartment instead of in a nursing home. They might not have the same expert care around the clock, but they have their own furniture and it's their home. And, well, what's it going to do? Shorten their lives?

In honor of Rosh Hashanah and Yom Kippur:

O God in Heaven,As we approach another year,we ask Your blessings upons usand upon our loved ones.Grant us the courage to peer into our lives,the wisdom and discernment to evaluate what we see,and the strength to act with resolve to changewhatever needs improvement.

In honor of Michaelmas:

When to my being’s depths I penetrate,There stirs expectant longingThat self-observing, I may find myselfAs gift of summer sun, a seedThat warming lives in autumn moodAs germinating force of soul.